Wednesday, December 15, 2010

Last Call for Shutterfly Holiday Cards!!

When I saw Shutterfly's Holiday Card promotion giving bloggers 50 free holiday cards I signed up right away. And that was as far as things got until this morning. I had Christmas ensembles laid out for each of us to wear and Goldie's Christmas party. Then Children's Hour was cancelled and that gave me the time I needed. Imagine my surprise when I logged into Shutterfly and saw that this promotion ends TONIGHT at midnight! Do I have good luck or what?

I have been a customer of Shutterfly for 8 years. I love their photobooks (Goldie really loves them), cards and invitations. I enjoy being able to pick and choose what I want online and not have to stand in the middle of store with 4 kids running circles around me. If I'm lucky. Sometimes, they just take off in straight line.

Here is our Christmas card from 2008:
Plaid Christmas
Shop Shutterfly for unique, personalized Christmas photo cards.
View the entire collection of cards.

Here is a holiday card/birth announcement from last year. I just couldn't send out cards until all my children were here!
Family Snowfall Teal Christmas
Create beautiful photo Christmas cards at
View the entire collection of cards.

I've been browsing this year's Christmas cards and here is what I'm looking at so far:

Sharing the Love or Our Shining Stars

Tuesday, December 14, 2010

Homeschooler with Down Syndrome Signing "It's About the Cross"

This video is from a mom on my "local" homeschoolers with special needs email list. She is graciously letting me share her beautiful daughter Abigail signing "It's About the Cross" by The Ball Brothers.

Sometimes it is hard for me to imagine Goldie's future, both near and distant, because there are so many possibilities on a path that is always changing. Just when I was lamenting over Goldie's lack of fine motor skills in relation to her signing, this popped up on my screen. Watching Abigail reminded me to just be patient and that there are bigger things than how well my daughter can sign.

Thursday, December 2, 2010

Homeschool Preschool - Color Sorting

Goldie has been keeping me very busy this fall doing all kinds of preschooly things. (I've been heating my kitchen with my laminator!)  Goldie's latest achievement is sorting by color.  Sorting is an important part of an early math curriculum. We started working on this around her second birthday at the urging of her vision therapist. I didn't think she was ready for actual sorting so I focused more on just learning colors. Once Goldie was able to sign her colors (thank-you Signing Time) I was able to know how well she could identify and label her colors.

First I tried having her sort with Busy Bugs. But, she was so distracted by all the different types of bugs that she didn't care what color they were. Spider, caterpillar, fly, etc...

Then I had a lightbulb moment when Swatcho left her Sorry! game on the kitchen table.

Sure enough, without the distracting bugs, Goldie was able to sort the red from the blue and place them on the correct squares. Another important math concept is one to one correspondence.

After this, I gave Goldie red, yellow, and blue buckets with a pile of colored cubes.  She shocked me by immediately sorting them out. I had to run and get green and white bowls. If more than one color was stuck together she would pull them apart and place each cube in its correct container.

Moments like these just blow me away. I find myself thinking back to when Goldie was born and being told she had Down syndrome and then at a year old when I was told she was legally blind. I wondered then if these days would ever come. Now, I see her love of learning and how she wakes up one day and just does something she's never done, but acts like she's always known how to do it. And my heart overflows.

Wednesday, October 20, 2010

Buddy Walk 2010

The fam.

Goldie riding the trackless train.

Swatcho and Goldie riding the train.

The entire length of the walk was covered with people from beginning to end! It stretched out behind us just as far.

Tuesday, October 19, 2010

Fall Sensory Tubs

I always keep a tub of dried beans around for sensory play. Goldie and my second daughter are the ones who love to play in them the most.

I decided to change it up for fall. There was a 4 lb bag of popcorn sitting in my pantry for the last 18 months, so I switched beans for popcorn. We've been hiding farm animals in it, but you could also use acorns or small pine cones.

Goldie is doing well with pouring, so I added these small bottles to give her more of a challenge. FYI: She only plays with these on our enclosed porch where her baby brother is never allowed.

Then I found some Halloween inspiration at No Time for Flash Cards.  I decided to put the black beans in a plastic orange pumpkin and use some counting bugs we already had.

Goldie wasn't very impressed. I think it was hard for her to see into the pumpkin and it didn't give her enough room to really play with them. I'm going to put them in plastic tub, unless she like my next idea.

That was to make and eye-spy container. I took a large plastic container that used to have almonds in it. Have I mentioned how much Goldie loves almonds? I had to start buying them at Sam's Club. I put the beans, bugs and some other toys in it. This will allow both Goldie and Hank to play, since the beans are safely inside.

If you have any great ideas, please share them. Once fall is over, we have a long winter ahead of us. Its always good to have a few tricks up my sleeve.

Monday, October 18, 2010

OT for Girls!

This post is full of gender stereotypes. As a mother of girls and now a boy, I gave up long ago on staying gender neutral when it comes to toys. You see, they know from birth that they are boys or girls. I gave my oldest a toy drill and she used it as a hair dryer. Hank loves to flip the baby doll stroller over and play with the wheels. Of  course, I do have my limits. Our house is a Barbie and Bratz free zone.

About three years ago, my daughters begged me to buy them Snap 'n Style dolls. I resisted as long as I could because we already had Madeline, her friends, babies, and American Girl dolls. But, Grandma bought some and I eventually caved. I really thought they were too babyish. So, they've sat in the basement until this summer. Goldie and the neighbor girl, she's 8, play with them everyday. I love this toy because Goldie doesn't need any help. She can just be one of the girls, enjoying her dolls.  The clothes snap onto the front of the dolls with one finger, or several fingers if you happen to have some low muscle tone. The hat and shoes are hard for her to put on, but she doesn't seem to care and it gives her a challenge.

Now, I'm not a huge princess fan, but when I saw this styling kit at my sister-in-law's house, I knew Goldie had to have one. It has a flat iron and a curling iron. The flat iron works like tongs, which the OT has been using to help Goldie develop pre-scissor skills. The curling iron is similar, but you only need to use your thumb to open it. After a couple months of play, Goldie can use the flat iron. She's only doing straight hairstyles, for now!  I picked it up at Wal-mart for around $15. I think. I'm sure it was under $20, so don't buy it from Amazon for $35!

Thursday, October 14, 2010


Goldie has met some little milestones, some call these inchstones, that I need to document before I forget the details. She is 3 1/2 and moving full steam ahead toward 4!

- Goldie can dress and undress herself, even in her brother's clothes. She mastered this skill completely on her own, all I did was leave baskets of laundry around for her to practice. BTW, she can also fold washcloths, handtowels, and diapers.

- Last night, upon noticing that her sisters were dressed for bed, she walked upstairs, got her pajama top and matching bottoms out of her drawer, came back down and threw them at me.

- At dinner, she served everyone salad, with tongs. Weeks of climbing on the table to get second helpings has finally paid off.

- At Children's Hour, they ran out of tiny plastic cups for snack time. So the kids had to drink out of regular styrofoam cups. I just knew that Goldie would need help. She told me to go away and drank two servings of apple juice without spilling or choking!

- Before snack, they had a visit from the fire department. When they asked for a volunteer to demonstrate "stop, drop, and roll" Goldie walked up to the front of the group, dropped to the ground and rolled. She was saying roll the whole time, then she stood up and clapped for herself. All the volunteer fire fighters knew her name before they went home. ;)

- Wishes do come true, I have another little girl who loves Madeline. My oldest was all about Madeline, so I've been saving all the dolls and books hoping they would get some more love.

- When I was reading "line", as Goldie calls her new favorite story, I stopped several times (leaving off the last word) and she was able to complete the rhyme! Another first!

- Goldie is really into learning her colors. She loves to sign and say them. She can sort red, blue, yellow, and green. 

Thursday, October 7, 2010

Goldie Goes to Children's Hour

I've mentioned before that we are not sending Goldie to preschool this year. So, you may be wondering "What does she do?"

I decided to sign her up for a program at a local church called Children's Hour. Goldie goes once a week for 2 hours. My neighbor is her teacher and I'm the permanent helper in her class. It is an all volunteer program that one of my other children attended for two years. No one has any type of education background, let alone any special ed experience. My mom, who has worked in early childhood classrooms as long as I can remember, described it as "developmentally inappropriate." Which is why I love it!

There is no formal instruction or curriculum. No IEPs, no therapists to count how many times she gets something right. Just Goldie and 8 of her peers.
They do have free time with play-do or puzzles, opening songs, weather bear, craft, snack, gym or music, and a bible story.

I expected the first couple of months to be pretty rough. After an awful summer of "Story Time for Children of All Abilities" at the library, I set very low expectations. Sitting still while someone reads to a large group is not one of Goldie's abilities. Yet. I even second guessed my decision to sign her up for a program with only typical children and no adaptations. However, she has been doing great!

My proudest moments are when I see her at snack time, eating and DRINKING from a cup, and holding her hand as she walks down the steps. I had set a goal at the beginning of summer that she would be able to do both of these things by September. Goldie has worked so hard and I love to see the joy on her face when she has her own miniature cup of juice just like all her little friends. Sometimes, after snack is over, she'll sneak over and try to pour herself another drink.

During music, Goldie does all the hand motions that go with the songs or she and I use ASL signs. In the gym she has been able to do all of the activities with no more help than the other children need.

I've been observing how the children relate to each other. There are two boys that come together and I also bring my niece with us. I have yet to see the children really talk to each other and try to form new friendships. The boys stick together and my niece always wants to be near Goldie. Goldie is ready to be friends with anyone, especially the boys. She likes to sit by them and put her hand on their backs. One of them even seems to be looking out for her when she needs help.

The biggest challenge is craft time. The first week wasn't bad, just coloring and some tiny stickers. Then, they moved craft to a room with bins of toys. So, now she wants to ditch the hard fine motor work to go play in the toys. I keep redirecting her back to the craft table and try to give her enough help that it isn't overwhelming to her. At home she has shown a big interest in coloring. I keep a desk with paper, crayons, and markers in the kitchen for her. When they sent home a coloring page I put it on her desk. She sat down on her own and colored each flower yellow. This is the first time she has ever done anything like this! My pile of Goldie's artwork is growing.

At this point, I'm very happy with our decision and the activities we've chosen for Goldie. I think between Speech, OT, Children's Hour and our homeschool field trips, she's got plenty of learning opportunities, but she isn't over scheduled. Which is good for me too!

Tuesday, October 5, 2010

Comparing Therapy Service Providers - Part 3 or Let's Talk Money

This is the last in a series of posts comparing the public and private therapy providers we've used since Goldie turned 3. Part 1 is here and Part 2 is here.  This is only the experience of one family living in a fairly rural county in Pennsylvania.

One thing I didn't mention in the previous posts was how these services were paid for. I believe the Early Intervention program receives county, state and federal funds. I'm not completely sure, but there is no cost to use their services. The private speech and OT are billed to our private health insurance through my husband's employer. (We exhausted that coverage a couple months ago.) Then, whatever isn't covered is paid by Medicaid. Goldie qualifies for this because she has a diagnosis of Down syndrome.

Another program we utilize is HIPP, Health Insurance Premium Payment. HIPP pays the insurance premium for the employee and the child with the disability if it is more cost effective than adding the child onto one of the state's insurance plans. I've learned this program can work a couple different ways.
1. My husband's current employer deducts the employee portion of a family policy directly from his paycheck. Then, they asked that HIPP send the reimbursement directly to us.
2. His previous employer (where he worked when Goldie was born) continued deducting the employee portion of the health insurance premium, had the reimbursement from HIPP sent directly to themselves, and kept it all.

When I talked to the very nice HR lady  about these two scenarios her reply was that "We will pay the same for your family's insurance that we would pay for any of our employees. You are the one's raising Goldie, that money should go to you." You could have knocked me over with a feather. My husband drive too far to work hours that are too long, so it warmed my heart to know that he works for a company that is honest and caring.

Back to my comparison, I've thought about what we would do if Goldie's private therapy wasn't covered. I know that in some states these services wouldn't be covered. Would we give it up? No way! We would find a way to pay for it because it is making a difference in our lives. Even if it meant organizing fundraisers and picking up a part time job.

Wednesday, September 29, 2010

Sunday, September 26, 2010

Good Deals on Talk Tools and more!

I tend to fluctuate between wanting to give Goldie every opportunity to succeed and feeling like I'm just throwing money at her disability. My other kids had a shape sorter, Goldie had 3. Ditto for stacking toys, puzzles, and pegboards. Don't even ask how many board books I've bought for our low vision toddler.

So, I'm always on the lookout for a way to save some money. This month has brought a couple good deals our way.

Let's start with two that I found over at Got Down Syndrome's blog.

First, the book Down Syndrome: What You Can Do is available for 10% off. Offer is good until Sept 30, 2010.
The next one from Talk Tools is also good through Sept. 30th.
"Our MOST popular promotion is back!

RECEIVE 40% OFF ALL EDUCATIONAL DVD's!!! --  Prices as low as $39.00!

**Our Self-study DVDs are among the most accessible and convenient means to acquire continuing education units (CEUs), and upon completion ITI will make sure the required documents are filed on time and correctly with either ASHA or AOTA. Additionally, the presence of full-length one to two day workshops in your multimedia library will allow you and your colleagues to review the material whenever, and at whatever pace, you like**
Visit TalkTools website at I ordered some things and have been sharing them with Goldie's therapists.

The third deal available right now is from Woodbine House. In recognition of National Down Syndrome Awareness month they are taking 20% off of books and DVDs on Down syndrome. Just go to their website and click on "specials" to see the items included in the sale. This offer is good during September and October. I'm thinking I'd let to get "Views from Our Shoes" for my girls.

Last, but not least, is my newest place to shop on the web. Since Hank hates shopping and Goldie isn't much better I'm usually rushing through the store trying to get out as fast as possible. I always forget something. This is why I love shopping online. Some of Goldie's supplements I can only get online. I have had to order from 3 different places to get everything we need. Now, I found a store that sells both the ginkgo and fish oil Goldie takes. Take 20% off your first order at with promo code WIFF2267 . Don't forget the free shipping on orders over $25! is  the sister site to, so I can even add replacement straws for Goldie's cups or diapers for Hank to our order.

Tuesday, September 7, 2010

Comparing Therapy Service Providers - Part 2

When Goldie was a year old, a pediatric therapy provider moved in 2 miles from our house. Considering we live in a pretty rural area, this is quite a blessing. Otherwise, we would be driving 25 minutes to the nearest outpatient therapy office.

At Goldie's 3 year check up I asked her pediatrician for a prescription for a speech and occupational therapy evaluation. I made an appointment for the evaluations and brought the prescription with us.  After the evaluation, it was recommended that Goldie receive two sessions of speech and OT weekly, for thirty minutes each.

Initially, things got off to a slow start. with therapist B. She was there for two weeks, then left. Goldie worked with her supervisor until therapist A was hired to replace her. The supervisor was wonderful, had heard of Sara Rosenfeld-Johnson, and noted in Goldie's chart that we would like to use her techniques.
The first quality I noticed in "Ms. A" was that she has high expectations for the children she works with. I love this about her, but I've seen other parents scoff at her ideas. Some of the things she works on are: making choices, labeling, indentifying, using two words together, using sentences, and speech sounds. She also, does oral motor work, but I'll get to that later.
Goldie has begun to use a lot of words and phrases. When we talk to her she always repeats back part of what we said. I've heard a lot of new words from her doing this. Goldie can tell us "I want ___". She also understands "if/then" statements. This comes in handy for transitions and when she wants to do something and I need her to do something else. For example "If you wash your hands, then you can have a snack."

Occupational Therapy
Goldie took to her new OT, "Ms. M", right away. Ms. M also has high expectations for Goldie. I have to admit that even I was skeptical at first because of Goldie's low vision. She does much more than simply work on fine motor skills. Goldie does many activities while sitting on a swing or therapy ball to improve her core strength, balance, and eye hand coordination. They also work on dressing by having Goldie remove her shoes and put them on before she leaves.
I have seen an improvement in Goldie's arm, hand and core strength. She is also beginning to dress herself independently and can completely undress herself.

The Best Part!
Both therapists work together on oral motor activities to help Goldie with drinking, tongue and lip movements, etc. This was nearly impossible when Goldie was in the birth to three program and was not an option within her IEP. I wrote more about it here.

More Details
The office has mostly bare walls with an occasional B&W photo of children. It is very neat and clean. Goldie has little to no distractions (most days).
Goldie enjoys being there and trusts her therapists. So do I.
There has not been as much consistency as I would like. Her OT is on maternity leave and they have 2 different OT's covering for her. Then, when I was making our fall appointments the scheduling person switched Goldie to a different speech therapist. I don't know what made me ask if she made the appointments with Ms. A, but I was glad I did. I let her know it was absolutely not acceptable to shuffle my child around and the situation was rectified. It bothered me to find out that it was intentional. They were moving all of her Thursday kids to a new therapist's case load. Now I know to be on my toes when making future appointments.

Friday, September 3, 2010

Comparing Therapy Service Providers - Part 1

Occasionally, as I'm reading other blogs, I run across the question of weather private therapy is "worth it". So, I thought I would write a post (or 2 or3) on our experience with both public and private agencies. I'll have to start way back in March, when Goldie turned 3.

State of PA Early Intervention

During the IEP process, one of our options for Golden was to place her in a classroom where she would receive speech, OT, PT, and a vision teacher on a consultant basis.  This means that she would never be entitled to individual or pull-out sessions. I was told that the therapists sometimes worked one on one, but it was discouraged. In this model of service delivery the therapists simply consult with the teacher about how to meet the child's needs in the classroom. I  inquired specifically about how they would  incorporate oral motor therapy this way and was told it would be done as a group activity. Choosing this option would give a child the maximum amount of classroom time, which can be great if they have minimal delays or a really great teaching staff.

The second option, and the one we chose, was to refuse a classroom placement for Goldie and receive services on an itinerant basis. We live in Pennsylvania where the law mandates that each area of delay must be addressed in the IEP. This meant that while we only wanted speech and occupational therapy for Golden, we had to have speech, OT, PT , and a vision teacher. They did not force us to have a special education teacher because we are homeschooling and I will be doing the teaching. Her IEP was written to have me bring her to the classroom for speech and OT weekly. PT would be provided every other month at our home, except in the summer. The vision teacher would consult with me on a monthly basis.

How it played out:
I never heard from the PT in the six months following the IEP meeting.
The vision teacher was nice to consult with on goals for Goldie, but was unable to provide us with any new activities or strategies.  She made some nice charts for me to keep track of Goldie's progress.
The speech therapist and the OT had very tight schedules. They could only see us at lunch time when the classrooms were empty (mostly). This was Goldie's normal nap time. Most of the time she was asleep when we got there and I had to wake her up.

Initially, Goldie didn't like the speech therapist so I sat in the classroom with them. This showed Goldie that the ST was someone I knew and trusted. We continued this for about a month. The last session was just Goldie and the ST. She was very impressed that Goldie could follow the simplest verbal instructions. For oral motor therapy she used a work sheet with a face on it and circles at the bottom. Every time Goldie stuck her tongue out (not up or anywhere specific, just out) she could put a paint dot on a circle.

Moving along to OT, he scored big points with Goldie simply because he was a man. (What can I say, her Daddy works long hours?) He worked with Goldie on a variety of fine motor tasks such as pre-scissor skills and using two hands when working on a task.

Other noteworthy items: Goldie's biggest struggle, drinking, was not addressed by anyone because we refused to put her in a classroom. Drinking could only be addressed if she was there for snack time.
 The classrooms where Goldie received services devoted a large portion of space to adult work areas. Each of them had at least 4 adult work areas and the clutter that comes with them. The walls were covered with "stuff" for both the children and adults. Every vision evaluation Golden has had recommends that she needs things to be kept simple and uncluttered.
There was one speech session were Golden was unable to attend to the ST because of an adult the room who was being loud and distracting.

I don't think this is shaping up to be as "objective" as I wanted it to. But, by the time Goldie's therapies started I had been jerked around a bit by the supposed Service Coordinator and was wondering if I would ever meet someone who could see Golden and not her disability.

I'll leave you with a picture of Goldie on our field trip to the Carnegie Science Center.  It is only $1 per person for families of a child with a yellow ACCESS card (Medicaid).

Thursday, September 2, 2010

Helping Goldie Conquer Drinking

Normally, when I write about Goldie's drinking, it's a post brought on by frustration and fear. So much has changed since April when I wrote this. I made another appointment with the ENT. He recommended speech therapy. At that point she had been seen by 5 different speech therapists and 4 occupational therapists. (And had been receiving both on a weekly basis for years) We discussed doing another swallow study and even using a scope to see what was going on. I went home and talked to yet another ST about the value of these tests for Goldie. My husband and I decided we would try one last thing before subjecting Goldie to more tests.

Goldie had started private speech and OT in April, so by the beginning of June she was feeling very at home with them. I explained to them that Goldie's #1 problem was drinking and getting enough fluids.  The very next week they began co-treating for 15 minutes each week. Then the following 15 minutes the OT continued working with Goldie on drinking and other oral motor exercises. 

Goldie's progress has been nothing short of astounding!  Within two weeks we no longer had to thicken anything she drank. They immediately identified which straw cup (of the many we own) worked best for Goldie. After 4 weeks I could put water in her cup. This is huge because she always choked on plain water. Now she is able to drink from a small open cup at mealtimes and can have juice boxes/pouches when we are at picnics. It was so nice to take the kids to the park and just throw a Capri Sun in the bag for each of them. I love the way she holds on to the top of the pouch and sips from the straw. Very cute!

Now, we just have to work on her brother's food "issues". He has a gag reflex that just won't quit and a very sensitive system.

Saturday, August 7, 2010

Ka woop

Ka woop is how Goldie asked for more cantaloupe at dinner tonight.  She even put a little pause in between syllables. It was so cute, we kept coaxing her to say it. Twice was all we got.

Her speech therapist has been working on vocabulary with her. To be honest, I'm not sure why. Well, not really, I do know Goldie has to understand words before she can begin to use them. But, I don't know if the ST realizes how many words Goldie knows. I had also hoped to see more oral motor activities being done. I asked for a copy of the treatment plan so I can get a better understanding of what strategies she's using and the goals they are working towards. For what its worth, I really like the ST. I've been very impressed that she has high and appropriate expectations of Goldie.

In the mean time, I decided to start keeping track of just what words Goldie can say. I started yesterday counting only spoken words, no matter how hard they were to understand. I was blown away that she used 87 different words!! I had no idea she was using that many. Today we weren't as diligent, but I noticed a bunch of words that she didn't say yesterday, so tomorrow we are going to keep track again. I also think its important that most of these were said without prompting. She either initiated the conversation or repeated them after I used them in a sentence. Goldie is not a "performer" so the best way to know where she is developmentally is to watch and interact with her during normal family routines.

Card Campaign for Sarah & Joyce


As someone who learned to sew at about the same time I learned to tie my shoes and would love to be 15 again just so I could go back to my job working in a fabric store and who also has a daughter with Down syndrome, this story makes my heart sing. So, please go over to ReJenerationS and read about what you can do to help celebrate!!

Saturday, July 24, 2010

Missing Post?

Has anyone ever had a post disappear from their blog? One of my first posts was a few short paragraphs about breastfeeding Goldie. I went looking for it this morning and it is gone. It still shows up in my reader, but when I click on it, I'm taken to the message "that page doesn't exist on the blog ..." 

A friend sent me a link to the Breastfeeding Cafe blog carnival. Today's topic is breastfeeding in special circumstances. So, maybe its time for me to re-post or write something more detailed and informative. 

Wednesday, July 21, 2010

Brakes & Breaks

As a mother of four, it isn't often that I get to take a break longer than nap time.  Until, life puts the brakes on. I had surgery 6 weeks ago. It was scheduled and planned well in advance. Still, nothing really prepares you for not being able to care for your family. I always try to see the positive in everything, but it was really eluding me in the weeks and days leading up to the surgery. Of course, in the weeks since then it has only become more obvious.  My life was out of balance.

It is very easy for me to live in Down syndrome World. It's so simple to get there. All I have to do is take a seat at the station (between the family room and the kitchen) and wait for DSL express to pick me up.  Then, I simply choose from over 200 pre-programmed stops  (favorites, bookmarks).  Oh, I better not forget to pick up the mail (Yahoo groups) while I'm out! It stacks up fast.

Now seriously, I'm a research junkie. I do believe that has been a good thing for Goldie. There is a steep learning curve when your child is born with any kind of special needs. However, I think I've covered enough of that curve to warrant taking a break for a while. I wish I could say I came to this conclusion on my own, but I had some help from a too slow to use laptop. Not to mention being in too much pain to even think about sitting at my desk.

With the help of my Mom and my husband we pulled through. I'm even caught up on some of the movies I missed in the last 3 years along with having read all the books in the Twilight saga. Reading fiction was something I hadn't done since I was pregnant with Goldie. I also used the time to write  homeschool goals and objectives for  my two older girls, along with making some curriculum choices. Now that I've put the extra chromosome back in line I can keep moving forward with life, and this blog.

Friday, June 4, 2010

Feeding Blog

While scouring the internet in search of this straw  I came across a blog dedicated to pediatric feeding disorders. It's called  Food Chaining with Cheri Fraker and Laura Walbert.  I spent a lot of time reading through their posts and am very impressed, not only with their knowledge, but their insight and compassion for children. The commonsense approach (mayonnaise is not a food) is just my style. Hopefully, I can find some new ideas that will bring Goldie one step closer to drinking, and enjoying it. 

Thursday, June 3, 2010

St. Pete Beach, FL 2010

If you guessed Florida, last week, you were right! We took our first vacation as a family of 6 to St. Pete Beach in Florida along the Gulf of Mexico. If we had forseen how much Goldie would adore the beach we wouldn't have put this off for so long. The water was a warm and beautiful, with no signs of the oil spill. I really hope they are spared, and someone gets that thing stopped!

It is amazing how 3 kids, ranging in age from 3 to 11, can be completely occupied for hours with nothing more than a small pail and shovel. And really, Goldie was the one who monopolized that toy. The older two found endless entertainment playing in the waves. So, this meant my husband and I could sit in one spot and actually have a conversation using complete sentences. Imagine! We were even able to talk to other adults that we met on the beach. Their children gravitated to us, so they had no choice. (The same thing happens at home with the neighbor kids. Before Hank was born, my husband once had someone tell him they saw "his son" playing outside. He had to break the news that the boy wasn't ours.)

The hardest part of our trip was getting through the airports. Tampa International gets a big thumbs up from me for being very family friendly! They put us through a seperate security line for families. Then, Southwest Airlines let us all preboard with Goldie. (in Pittsburgh only my husband was allowed to board with her, leaving me to struggle with the baby and stroller myself)

Then, the day before we came home reality reared its ugly head. I received two calls on my cell, on from my doctor and one from Goldie's speech therapy provider. I returned the call to my doctor, but decided to wait until we got home to deal with the other one. There's something that just isn't right about being put on hold while you're at the beach. The receptionist was so not impressed when I told her where we were.

Of course, it wouldn't be a vacation if we didn't bring home a virus. 5 of us are stuffy and hacking. Goldie has an ear infection and was refusing to drink or eat popsicles. Why does she do this? I really don't get it, because she was still eating.

I'm sure we were quite a sight in the parking lot at Target. Goldie strapped in her carseat with me trying to force her to drink a blue Icee. I once noticed a mom and dad trying to make their son eat Jello in a restaurant (they were getting kinda loud) and thought "how ridiculous, its not even good for you." That little extra chromosome has caused me to eat a lot of words.

Monday, May 3, 2010

Gluten Free Chocolate Cake w/ Chickpeas

While we don't follow a gluten free diet in our home, I know a lot of people need to. I have a favorite chocolate cake recipe that I have been making for years, just because we love it. It has a very moist and rich texture.

1 1/2 cups smeisweet chocolate chips
2 cups cooked chickpeas (garbanzo beans), drained and rinsed
4 eggs
1 cup sugar
1/2 tsp baking powder
1 Tb powdered sugar
In small bowl, melt chocolate in microwave oven, 2 minutes on medium power. Inblender or food processor, combine beans and eggs.  Add sugar, baking powder and chocolate; process until smooth. Pour batter into non-stick 9-inch round cake pan.  Bake at 350 degrees for 45 minutes or until knife inserted in center comes out clean. Cool. Sprinkle with powdered sugar.  
It suggests serving it with raspberry sauce, but I just serve it plain.

Sunday, May 2, 2010

Addicted to Swaddling

What can make a baby go from this to this:

Swaddling. The dude is 4 months old and still rockin the baby straight jacket!
I think he'd like it if I carried him in the sling more, because its snug in there. But, it slows me down too much to have him in front of me when I'm trying to cook dinner or convince Goldie to use the potty.  I've been wearing him in a back carry with my Ergo. Is he too young for that?

I'd also like to give credit for the first photo to one of my girls. Not sure who was nice enough to snap a picture of their brother at his finest.

Saturday, May 1, 2010

The Morning After - Receiving Goldie's Diagnosis

We just celebrated Goldie's 3rd birthday. She certainly got the better end of the birthday deal. While she was busy licking icing and tearing open gifts, I began climbing Mt. Transition. Instead of snow, its covered in paperwork. I still haven't reached the top.

Last year, I posted Goldie's birth story, but didn't go into any detail about receiving her diagnosis. This year, I feel better able to talk about it.  I can look back and see the best and the worst of myself. I've forgiven myself for the worst and let go of the guilt.

During my pregnancy there was some concern that Goldie wasn't growing well. I measured small for my dates and had to have another ultrasound. This was the 2nd level II ultrasound for that pregnancy. They were able to get some great pictures of her heart that they didn't get the first time. The tech thought she was in the 50% and would be about 7+ pounds. Maybe if she had hung out another 2 weeks, but instead she was only 6lbs 1oz and 18 inches long. Her head circumference was so small it wasn't on the growth chart.   

I had the quad screen and it came back negative for an elevated risk of having a baby with DS. At the time, I didn't know it only screens your risk level and is not a definitive test. After working with breastfeeding mothers, I wanted to be able to anticipate any feeding difficulties or know if my baby would need extra attention after birth. We thought this test would meet that need. Turns out it didn't.

During my pregnancy I had a feeling that something wasn't right. I couldn't shake it and just kept telling myself it was anxiety. I spent the better part of my pregnancy in funeral homes, so it made sense to me that I was just being over anxious.

If I close my eyes I can still feel the first time I my skin met Goldie's. She was purple and spongy. The only thought I could form was "Why does my daughter have saggy skin like an elephant?" Out loud I said, "What's wrong with her skin. Doesn't she have enough fat on her? Were my dates wrong? Is she too early?" Down syndrome was the furthest thing from my mind.

The nurses kept reassuring me, telling me her Apgars were 8 & 9.

"Really?" the doctor said.

I stopped asking, distracted by the automated blood pressure cuff cutting off the circulation in my arm. My hand would curl into a ball while everyone just stared. I took it off, threw it on the floor and explained they would have to take my blood pressure the old fashioned way. (I'm not a good patient.) It was about this time our friendly nurse, Ann, clammed up. She wouldn't even look make eye contact with me.

Then it was time for Goldie to meet her sisters. Well, one of them, the other one was having a rough time.

I spent the night hiding Goldie under my nightgown, keeping her warm and hoping I could convince her to nurse. Hospitals in my neck of the woods still don't have rooming in. The nurse's aid came twice to bring Goldie to the nursery. No dice lady. Then a nurse who tried to help Goldie latch on. She asked if Goldie looked like my other babies. Finally, she patted me on the back and left.

Morning came and, again, the wanted Goldie in the nursery. This time the pediatrician was there to do the newborn health assesments.
"Great, I want him to come to my room to see my baby," I said.

"We don't do that."

"Ok. Then come get me and I'll bring her to the nursery."

"But, there's other babies in there. No ones ever asked to do this before."

"Your choices are he can check my baby here or I can bring her there. I don't send my 8 yo to the doctor alone. I'm not sending my newborn."

I let Goldie go to the nursery, so I could get a shower before seeing the doctor. But first I called my husband. That was the first time I cried. I planned on going home that evening, so he wasn't rushing in that morning. The plan was to wait until afternoon, then we could all go home together.

So, he wasn't there when I went to the nursery. Goldie wasn't with the other babies. She wasn't swaddled anymore. I could see a little gold bear on her chest to take her temperature, her stomach was bulging out in the center where the muscles didn't come together.

"I'm glad you asked to be here. Is you husband with you?" the doctor asked.


"I wish he was. Your daughter is showing some of the physical characteristics of Down syndrome."

The words echoed in my head for a few seconds. Then I knew I had to listen very carefully to everything he said because my daughter's health depended on it. The only things I could remember about Down syndrome were that it was an extra chromosome and it was forever.

The doctor and I, mostly I, formed a plan to get some nourishment into Goldie. Then I had to call her daddy. I still feel like crap for giving him such life changing news over the phone.

The next day we got our wish and were able to go home as a family.

It would be a week before we got the results of the bloodwork. A loooong week of crying, swearing, laughing and loving.

Our family pediatrician saw Goldie that day. I requested him that day because he is so compassionate and has a quietness about him that I enjoy. The room was filled with our family of 5, the doctor and at least on medical student.

"The results of the genetic testing came back and they show a triplication of the 21st chromosome."

After converting that to English in my head, I lost it. I bawled. I cried like I have never cried in front of so many people. Including my own children. I wish they hadn't been there. I was still crying when our van pulled out onto the main road. Finally, my husband said something that made me stop.

"You know, she's still our little girl. She's just like any other kid. She's going to take her first steps, say her first words and learn to ride a bike."

"Oh, yeah."

Thursday, April 29, 2010

More Occupational Therapy @ Home

I'm always looking for ways to foster skills Goldie is working on, yet are FUN for her and her siblings. Goldie has fine motor delays caused by her low muscle tone and her low vision. The hypotonia and nystagmus are always collaborating on ways to trash her eye hand coordination. It's our job to help Goldie get one up on them.

In the March/April 2010 edition of Mothering magazine I read Shannon M. Medisky's fabulous article, "Your Indoor Playground" about creating indoor playspaces. Namely, vertical ones to save space. One, in particular, caught my eye. It was a standing lacing board.

I pitched the idea to my husband thinking he would be annoyed by the addition of one more thing to his honey-do list. Nah. He said it would be no big deal. He picked up the supplies for $6.42 and had it put together in about 20 minutes. It's nice and big so 2 or more kids can play at one time.

Goldie's OT has suggested using pipe cleaner with lacing activities instead of the typical laces. Goldie isn't sold on this idea. She sees her sisters using the string and that's what she wants. I play a game with her by standing on the opposite side of the board. We take turn pushing and pulling the large thread through the holes. For my older kids, they can use longer ribbon to make designs. (if their mother would dig it out of the craft cupboard for them)

I know not everyone wants something like this taking space in their living quarters. We've decided its part of the trade-off because we aren't sending Goldie to preschool. That means its our resposibility to provide educational and engaging activities for her.

If you'd like to read the article send me an email, then I can send you a digital copy of it!

And if you're looking for more OT @ home try here.

Tuesday, April 27, 2010

Goldie the Big Little Middle Sister

Her sisters call her the Little Middle Sister, but she is also one of Hank's big sisters. I think she loves all her sisterly roles. Goldie is almost always nice to Hank. We just have to watch because she will try to take care of him beyond what she is capable of. And I say "almost always nice" because there was the one day she dumped a glass of cold water on his head while he was sleeping. (Baptism - check.) Hey, it works to get rid of the cat.

So here are some pics I took this month of our Goldie girl.

Those are Hank's binkies in her mouth. I just wash them when she puts them down. I figure if we make a big deal out of it, she will too.